Tuesday, 4 October 2011
Thursday
Venue for the after mass reception is confirmed as The Loyal Caledonian Corks, 225 Alcester Road South, Kings Heath B14 6DT. There will be food and coffee and tea from about 2.30 pm.
Friday, 30 September 2011
Niamh's Funeral
Niamh's funeral service will take place at 1.15pm on Thursday 6th October at St Dunstan Catholic Church, Kingsfield Road, Kings Heath, Birmingham, B14 7NJ. All (including children) are welcome.
We, Niamh's close family, will then take Niamh to the Crematorium for a short private ceremony.
After the Church mass, please come to a reception in honor of Niamh. We will join you after the Crematorium. We do not yet have the details of the venue but will update the blog as soon as we do. At the reception, there will be a remembrance book where you can write condolences or any memories you have of Niamh.
Practical Information:
- Alex, Emilie and I will be wearing formal black clothes. Please feel free to wear whatever you wish (Peppa Pig if you wish).
- No flowers please. In lieu of flowers, donations may be made to the Birmingham Children Hospital, Ward 10 (neurosurgery) and Ward 15 (oncology). There will be a collection during or after the Church mass.
If we have forgotten anything, please do let us know.
We, Niamh's close family, will then take Niamh to the Crematorium for a short private ceremony.
After the Church mass, please come to a reception in honor of Niamh. We will join you after the Crematorium. We do not yet have the details of the venue but will update the blog as soon as we do. At the reception, there will be a remembrance book where you can write condolences or any memories you have of Niamh.
Practical Information:
- Alex, Emilie and I will be wearing formal black clothes. Please feel free to wear whatever you wish (Peppa Pig if you wish).
- No flowers please. In lieu of flowers, donations may be made to the Birmingham Children Hospital, Ward 10 (neurosurgery) and Ward 15 (oncology). There will be a collection during or after the Church mass.
If we have forgotten anything, please do let us know.
Thursday, 29 September 2011
Day of the Archangels
This morning, 29th September 2011 at about 5.30 am, Niamh died. Her death was very peaceful and happened quickly and without distress. One minute she was breathing and the next she was quiet and her heart was no longer beating.
We spent some time with her in our room having some cuddles on our knees. Emilie gave her cuddles too. We washed and dressed her and now she is in the special room at Acorns. The special room is like a normal bedroom but where the air is kept cold.
It makes us happy to think that Niamh has died on the day of the Catholic calendar Michaelmas or the Feast of Saints Michael, Gabriel, and Raphael (the Archangels). She is with the Angels now.
We spent some time with her in our room having some cuddles on our knees. Emilie gave her cuddles too. We washed and dressed her and now she is in the special room at Acorns. The special room is like a normal bedroom but where the air is kept cold.
It makes us happy to think that Niamh has died on the day of the Catholic calendar Michaelmas or the Feast of Saints Michael, Gabriel, and Raphael (the Archangels). She is with the Angels now.
Tuesday, 27 September 2011
A Bit of Sunshine
We were glad to spend the afternoon outside in the sunshine this afternoon with Niamh.
As Niamh cannot spend too much time in the pushchair anymore, we took the sofa from our bedroom outside with her ROHO mattress on it. Niamh was comfortable and her breathing calm.
Niamh has now been off fluid and food for two weeks. All the staff at Acorns seem as amazed by her strength and resilience as we are. Niamh is now very skinny, her body marks very easily so we change her position every few hours. She remains peaceful. The dose of her medicines was increased yesterday, first time since her syringe driver was put up on Wednesday 14th.
Emilie is now back at school after two weeks off.
As Niamh cannot spend too much time in the pushchair anymore, we took the sofa from our bedroom outside with her ROHO mattress on it. Niamh was comfortable and her breathing calm.
Niamh has now been off fluid and food for two weeks. All the staff at Acorns seem as amazed by her strength and resilience as we are. Niamh is now very skinny, her body marks very easily so we change her position every few hours. She remains peaceful. The dose of her medicines was increased yesterday, first time since her syringe driver was put up on Wednesday 14th.
Emilie is now back at school after two weeks off.
Wednesday, 21 September 2011
Tough Little Cookie
Niamh has been in an unwakeable sleep since last week. We did have another scare last night when her breathing became very noisy and fast. We adjusted her position onto her side and she managed to cough and sort herself out.
Niamh seems to be holding on to life with the same resilience and strength she has shown all through her treatment.
She's now on day 7 without any food or water (after her stomach stopped absorbing). She has continued with the same medication through the syringe driver and doesn't seem to be in any pain or distress.
The areas of skin where her shunts protrude from her head have become sore and we have had to put duoderm over them to help protect them. She's also sleeping on a special mattress (ROHO) which really helps.
We try to keep up with doing things with her, though not very much any more. Just walks in the garden, different rooms in the hospice and the occasional warm shower using a special shower bed. Eye care and mouth care. Lots of cuddles, of course.
Everyone at Acorns is taking great care of us and making these last days with Niamh as special as they can be.
Niamh seems to be holding on to life with the same resilience and strength she has shown all through her treatment.
She's now on day 7 without any food or water (after her stomach stopped absorbing). She has continued with the same medication through the syringe driver and doesn't seem to be in any pain or distress.
The areas of skin where her shunts protrude from her head have become sore and we have had to put duoderm over them to help protect them. She's also sleeping on a special mattress (ROHO) which really helps.
We try to keep up with doing things with her, though not very much any more. Just walks in the garden, different rooms in the hospice and the occasional warm shower using a special shower bed. Eye care and mouth care. Lots of cuddles, of course.
Everyone at Acorns is taking great care of us and making these last days with Niamh as special as they can be.
Friday, 16 September 2011
Changes in Breathing
Niamh had a pretty quiet day until the evening when her breathing started to change. Her breathing became much more rattling and much faster. These changes reached a peak at about 8pm when she was leaving big pauses between breaths. It seemed like she was stopping breathing and starting again. We weren't ready for this even though it's what we're here waiting for.
Niamh did settle a little after this and we repositioned her. She remained reasonably settled in the night with a few episodes like the earlier one.
We all stayed up late watching the sound of music and then slept close to Niamh.
Niamh did settle a little after this and we repositioned her. She remained reasonably settled in the night with a few episodes like the earlier one.
We all stayed up late watching the sound of music and then slept close to Niamh.
Wednesday, 14 September 2011
Relaxed
Niamh was relaxed last night and today and didn't need any extra medication (nozinan and oral morphine). In fact, this afternoon she became noticeably more relaxed and we gave her a nice warm shower on an special mesh chair. She really seemed to enjoy it and did open her eyes a little.
Niamh is no longer absorbing food or water. Her medications have been switched to a syringe driver and thaloset. Not all her medications can be given this way so they have been adjusted slightly. Shes continuing to have morphine but the anti-sickness and anti-convulsion medicines have been replaced with nozinan and midazolam. This may have a more sedating effect but should be effective at stopping sickness and seizures.
We've all said goodbye to Niamh and accept the inevitable which, today, is one step closer.
Emilie has had a very busy day today and enjoyed herself playing making and swimming and tipping buckets of water over daddy's head.
Niamh is no longer absorbing food or water. Her medications have been switched to a syringe driver and thaloset. Not all her medications can be given this way so they have been adjusted slightly. Shes continuing to have morphine but the anti-sickness and anti-convulsion medicines have been replaced with nozinan and midazolam. This may have a more sedating effect but should be effective at stopping sickness and seizures.
We've all said goodbye to Niamh and accept the inevitable which, today, is one step closer.
Emilie has had a very busy day today and enjoyed herself playing making and swimming and tipping buckets of water over daddy's head.
Tuesday, 13 September 2011
Extra Days
Since Friday, Niamh has settled down and had no more seizures that we've seen. She has kept her routine of spa or pool in the afternoon. We've worked on making the transition from our laps in her room to water and back easier. Yesterday we got it right and had a really nice spa keeping Niamh nice and relaxed.
We've been grateful for the extra days we've had with Niamh. We've held her close to us with Emilie and enjoyed reading books, singing nursery rhymes and listening to CDs.
Niamh finds it very difficult to be moved, changing nappy was tricky last night and this morning. We've given Niamh extra Morphine and Nozinan (helps with agitation) last night and this morning. She's nicely relaxed on Helene's knee now and has opened her eyes a little to see what Emilie is playing with.
Emilie got over her tummy bug quickly over the weekend which was quite a relief.
We've been grateful for the extra days we've had with Niamh. We've held her close to us with Emilie and enjoyed reading books, singing nursery rhymes and listening to CDs.
Niamh finds it very difficult to be moved, changing nappy was tricky last night and this morning. We've given Niamh extra Morphine and Nozinan (helps with agitation) last night and this morning. She's nicely relaxed on Helene's knee now and has opened her eyes a little to see what Emilie is playing with.
Emilie got over her tummy bug quickly over the weekend which was quite a relief.
Friday, 9 September 2011
Short Days Sleepy Head
Niamh has become very sleepy now, yesterday she was awake for less than one hour. Today she was awake quite a bit more, but slips between sleep and awake. She is lost most movement in her body, she still moves her arms sometimes, but the rest of her is very floppy. We still managed to get in the spa yesterday and today though.
Niamh is comforted very much by holding hands. So much so, that you need to give her good warning if you want to let go.
She did have what seemed to be some small but regular siezures around lunchtime. Luckily they stopped and haven't come back this afternoon. We have topped up her oral morphine which may be helping.
On the whole she is peaceful and relaxed, but it so hard for us to see her leaving us a little each day.
Just to make life challenging, we had to pick Emilie up from school early today with a tummy bug. She's been vomiting all afternoon.. fingers crossed she feels better in the morning.
Niamh is comforted very much by holding hands. So much so, that you need to give her good warning if you want to let go.
She did have what seemed to be some small but regular siezures around lunchtime. Luckily they stopped and haven't come back this afternoon. We have topped up her oral morphine which may be helping.
On the whole she is peaceful and relaxed, but it so hard for us to see her leaving us a little each day.
Just to make life challenging, we had to pick Emilie up from school early today with a tummy bug. She's been vomiting all afternoon.. fingers crossed she feels better in the morning.
Monday, 5 September 2011
Acorns Midnight Walk
Hayley, who used to look after Emilie and Niamh at nursery and also babysat for the girls on a number of occasions will be walking 10 km on the night of 17th September. She is hoping to raise as much as possible for Acorns. Hayley has visited us at Acorns. She was impressed, as we all are, with their facilities as well as the support and care given by all the staff.
Acorns have really been fantastic to us all. Staff and volunteers are all amazingly caring people. We were very pleased when Hayley told us she wanted to take part in the Acorns Midnight Walk.
To donate, please visit Hayley's fundraising page.
Niamh has been ok today, same really as yesterday. Very sleepy this morning and early afternoon but eventually woke up and had a nice time with big sister Emilie.
Emilie has enjoyed her first day back at school. Her social life is already getting busy with birthday parties.
They are now both in bed, a little excited as they know that nanny will be arriving soon after an extremely windy ferry crossing.
Acorns have really been fantastic to us all. Staff and volunteers are all amazingly caring people. We were very pleased when Hayley told us she wanted to take part in the Acorns Midnight Walk.
To donate, please visit Hayley's fundraising page.
Niamh has been ok today, same really as yesterday. Very sleepy this morning and early afternoon but eventually woke up and had a nice time with big sister Emilie.
Emilie has enjoyed her first day back at school. Her social life is already getting busy with birthday parties.
They are now both in bed, a little excited as they know that nanny will be arriving soon after an extremely windy ferry crossing.
Sunday, 4 September 2011
A day at home
A few more days have passed in Acorns. Niamh is still having some nice times: she is still loving the pool and spa sessions and our walks in the secret garden. We have enjoyed a couple of 'movie' evenings as a family, all cuddling up on the sofa - 2 hours of chitty chitty bang bang last night.
Niamh seems more sleepy each day. As we are having to give her Nozinan every evening now to help her sleep better (ie. to stop her arms from moving uncontrollably) , it is hard to know if her morning sleepiness is partly caused by the Nozinan or just the tumour. She tends to wake up properly after her lunchtime nap, around 3 or 4pm. Then she is awake for a good few hours.
Other symptoms we are now noticing more and more: her hands are getting more shaky and she is starting to lose balance when sitting (falls on the right, her weak side). She is also struggling to bear weight on her legs. Her right side is increasingly weak. It is heartbreaking to watch these symptoms again, after having already witnessed them last year before diagnosis.
We went home for the day today. We thought it would be nice for us all. Emilie enjoyed it. Niamh slept for most of our time there and did not seem too bothered to be home or in Acorns. Alex and I found it very difficult. We now know that we are best to stay in Acorns for the time being. Home is too real.
Emilie is very excited about starting school tomorrow and seeing all her friends. We have printed a few pictures of our meeting with Mr Tumble and our trip to Peppa Pig World to take to school. We want her to think of the good times we had during the summer.
Niamh seems more sleepy each day. As we are having to give her Nozinan every evening now to help her sleep better (ie. to stop her arms from moving uncontrollably) , it is hard to know if her morning sleepiness is partly caused by the Nozinan or just the tumour. She tends to wake up properly after her lunchtime nap, around 3 or 4pm. Then she is awake for a good few hours.
Other symptoms we are now noticing more and more: her hands are getting more shaky and she is starting to lose balance when sitting (falls on the right, her weak side). She is also struggling to bear weight on her legs. Her right side is increasingly weak. It is heartbreaking to watch these symptoms again, after having already witnessed them last year before diagnosis.
We went home for the day today. We thought it would be nice for us all. Emilie enjoyed it. Niamh slept for most of our time there and did not seem too bothered to be home or in Acorns. Alex and I found it very difficult. We now know that we are best to stay in Acorns for the time being. Home is too real.
Emilie is very excited about starting school tomorrow and seeing all her friends. We have printed a few pictures of our meeting with Mr Tumble and our trip to Peppa Pig World to take to school. We want her to think of the good times we had during the summer.
Thursday, 1 September 2011
Back to our Acorns Routine
I gave three reasons for Niamh's extreme sleepiness on Tuesday and actually there may have been a fourth possible and very likely cause. Niamh had a short fit on Tuesday morning. It was nothing like the two fits she had last year post surgery, it was not as scary and she came back to normal on her own without the needs for medicines. The consultant we saw yesterday told us that how ever short or long a fit is, it makes people extremely tired afterwards. This could explain why she slept so much that day. It is possible that Niamh will experience further fits.
We had a lovely day on the whole yesterday. After she woke up from her afternoon sleep, she did a bit of playing and enjoyed a spa session. We have definitely got used to our daily spa/swimming. She was very alert for it. She struggled getting to sleep in the evening. Her arms were very jerky. We agreed with the nurses that Nozinan was needed. She had a lovely sleep and woke up around 8am, nice and alert. We had a lovely morning. She is now having her long lunchtime nap.
Emilie has become very fond of the befrienders who come and do some art with her, especially Julie. She was very happy when Julie came to spend some time with her this morning. The timing was perfect as we had a meeting planned with a children counsellor, Sarah. After an initial chat with us, Sarah spent about an hour making a lovely kite with Emilie. This first session with Emilie was more about establishing a relationship with her, rather than to talk about our situation. Sarah offers support for siblings in Emilie's situation.
Emilie is doing well so far. On the outside she looks like a very happy child. She knows what lies ahead but doesn't like to talk about it. She is so young, it is hard to know how much she really understands as, as adults, we don't really understand either. She is looking forward to going back to school on Monday. Hopefully the routine of the school will give her a bit of an escape.
When I took her to buy some school shoes this afternoon, the shoe shop assistant asked her what she had been doing over the summer. She looked at me for an answer. He asked her if she had been on holiday and she said 'yes'. Emilie has had a nice summer on the whole but I could see that she was really unsure what to say, to be fair, I wasn't sure what to say either. She did handle it very well.
We had a lovely day on the whole yesterday. After she woke up from her afternoon sleep, she did a bit of playing and enjoyed a spa session. We have definitely got used to our daily spa/swimming. She was very alert for it. She struggled getting to sleep in the evening. Her arms were very jerky. We agreed with the nurses that Nozinan was needed. She had a lovely sleep and woke up around 8am, nice and alert. We had a lovely morning. She is now having her long lunchtime nap.
Emilie has become very fond of the befrienders who come and do some art with her, especially Julie. She was very happy when Julie came to spend some time with her this morning. The timing was perfect as we had a meeting planned with a children counsellor, Sarah. After an initial chat with us, Sarah spent about an hour making a lovely kite with Emilie. This first session with Emilie was more about establishing a relationship with her, rather than to talk about our situation. Sarah offers support for siblings in Emilie's situation.
Emilie is doing well so far. On the outside she looks like a very happy child. She knows what lies ahead but doesn't like to talk about it. She is so young, it is hard to know how much she really understands as, as adults, we don't really understand either. She is looking forward to going back to school on Monday. Hopefully the routine of the school will give her a bit of an escape.
When I took her to buy some school shoes this afternoon, the shoe shop assistant asked her what she had been doing over the summer. She looked at me for an answer. He asked her if she had been on holiday and she said 'yes'. Emilie has had a nice summer on the whole but I could see that she was really unsure what to say, to be fair, I wasn't sure what to say either. She did handle it very well.
Wednesday, 31 August 2011
Up and down
Yesterday we all felt very down. Niamh spent most of the day asleep. She woke up properly around 4.30pm in time to go for a swim which she thoroughly enjoyed. She stayed awake till about 8pm but it was an effort.
We knew that a few things may explain her sleepiness:
1) she had some nozinan on Monday night as she was a little agitated in her sleep. Nozinan is a type of tranquiliser. She only had 1/2 the amount she was given in A&E 10 days ago but it may have made her more sleepy.
2) it is common for children who have had radiotherapy to have a sleepy phase 6 weeks to 3 months after the end of their radiotherapy treatment. Niamh is right in that period.
3) the tumour. As the tumour grows larger, Niamh is expected to be more and more drowsy, sleep more and one day not wake up.
We feared the worst yesterday. When she woke us up at 6am, we both felt relieved that we were given more time. She went on to have a great morning. She watched a bit of TV in bed with Emilie and us (a bit of a squeeze), played with various wooden toys that have become her favorites in the playroom. We even took the girls for a walk to Cadbury World and spend some time in their free playground. By the time we got back Niamh still had some energy for a bit of coloring. She fell asleep around noon, her usual nap time since we've been here.
We are all feeling a little more positive. We know the end is near but we are just not ready. Will we ever?
We knew that a few things may explain her sleepiness:
1) she had some nozinan on Monday night as she was a little agitated in her sleep. Nozinan is a type of tranquiliser. She only had 1/2 the amount she was given in A&E 10 days ago but it may have made her more sleepy.
2) it is common for children who have had radiotherapy to have a sleepy phase 6 weeks to 3 months after the end of their radiotherapy treatment. Niamh is right in that period.
3) the tumour. As the tumour grows larger, Niamh is expected to be more and more drowsy, sleep more and one day not wake up.
We feared the worst yesterday. When she woke us up at 6am, we both felt relieved that we were given more time. She went on to have a great morning. She watched a bit of TV in bed with Emilie and us (a bit of a squeeze), played with various wooden toys that have become her favorites in the playroom. We even took the girls for a walk to Cadbury World and spend some time in their free playground. By the time we got back Niamh still had some energy for a bit of coloring. She fell asleep around noon, her usual nap time since we've been here.
We are all feeling a little more positive. We know the end is near but we are just not ready. Will we ever?
Sunday, 28 August 2011
Bit More Sleepy
We've had some more lovely days at acorns. We've been in the spa everyday before bedtime and Niamh has really enjoyed her shower afterwards when she plays with the water.
Niamh seems more settled as pain control and constipation seem more in balance now that she has been taking Movicol.
She is getting a little bit more sleepy during the day and is taking a nap for 2-3 hours in the day. This could be the period of somnolence associated with Radiotherapy normally 6 - 12 weeks after treatment.
Niamh likes playing repetitive games at the moment. games with beads or moving things from one bowl or box to another. She has become quite compulsive with these games. She particularly likes moving daddy's breakfast cereal from one bowl to another, including milky weetabix!
On the whole Niamh seems happy with her routine, is settled and sleeping well.
Niamh seems more settled as pain control and constipation seem more in balance now that she has been taking Movicol.
She is getting a little bit more sleepy during the day and is taking a nap for 2-3 hours in the day. This could be the period of somnolence associated with Radiotherapy normally 6 - 12 weeks after treatment.
Niamh likes playing repetitive games at the moment. games with beads or moving things from one bowl or box to another. She has become quite compulsive with these games. She particularly likes moving daddy's breakfast cereal from one bowl to another, including milky weetabix!
On the whole Niamh seems happy with her routine, is settled and sleeping well.
Thursday, 25 August 2011
Stable
A busy day today with many visitors. Niamh is stable, possibly a little more tired today than yesterday.
Thank you for all your kind messages.
Thank you for all your kind messages.
Wednesday, 24 August 2011
Improvement
Niamh is continuing to be better every day.
Today the girls enjoyed a pantomime this morning, 'Aladdin'. Niamh fell asleep 3/4 of the way through but really enjoyed what she saw. She fell asleep so peacefully despite all the noise, I was a little surprised. She has done a lot of walking inside and outside in the garden. Last week she could hardly stand on her legs. She is a lot more interactive and has been very interested in playing and being kept occupied. We had our daily spa before bedtime. Once again she loved it.
It is so nice to read books with her once again and to see her smile. She is still not the child she was two weeks ago but she has definitely improved a lot from last week and the weekend. We really wish we could freeze time now.
Today the girls enjoyed a pantomime this morning, 'Aladdin'. Niamh fell asleep 3/4 of the way through but really enjoyed what she saw. She fell asleep so peacefully despite all the noise, I was a little surprised. She has done a lot of walking inside and outside in the garden. Last week she could hardly stand on her legs. She is a lot more interactive and has been very interested in playing and being kept occupied. We had our daily spa before bedtime. Once again she loved it.
It is so nice to read books with her once again and to see her smile. She is still not the child she was two weeks ago but she has definitely improved a lot from last week and the weekend. We really wish we could freeze time now.
Tuesday, 23 August 2011
A few pictures from the weekend
Another nice day, not much to report. Niamh and Emilie have enjoyed seeing a couple of friends from nursery this morning (Niamh's boyfriend being one of them) and another one this afternoon. Emilie has also been busy with Julie, a volunteer at Acorns, doing some Art and Craft. We were not able to go in the pool today as there was no lifeguard but we were able to use the spa. It was lovely, a big family bath. Niamh was very calm and peaceful. They are both asleep now, looking forward to a pantomine in the morning.
Here are a few pictures taken at the weekend.
Here are a few pictures taken at the weekend.
Monday, 22 August 2011
Acorns Hospice
After a very difficult week, the last three days have been a little kinder to us all.
Wednesday, Niamh struggled a lot with headaches, itchiness, feeling uncomfortable. She fell asleep around 10.30pm but woke up a couple of hours later. She spent the whole night in our bed sitting up, refusing to lie down, moving her arms uncontrollably and unable to rest. It was a tough night. In the morning Alex took her to A&E. We wanted to know whether the neurosurgeons were planning anymore regarding her shunts and if not if we could increase her dose of painkillers. The neurosurgeons said that they didn't want to do anything as it was too early, but to keep her very hydrated. The oncologist consultant decided to replace the oral morphine she was on about 8 times a day with MST, a slow release morphine which is given every 12 hours. They said we could give Niamh more piriton (anti-icthing medicine) throughout the day, from every 8 hours, we could now give it every 4 hours.
By midnight on Thursday she was still awake refusing to lie down and moving her arms uncontrollably. Alex took her to A&E then, Emilie and I followed a couple of hours later. The doctors were very concerned about her. Were her symptoms due to the tumour progression or could they partly be side effects from the morphine and piriton? On top of everything, her heart rate was very low. They decided to give her some buccal midazolam, an anti convulsant drug. She fell asleep within minutes. It was amazing to see her calm and peaceful and be able to kiss her cheeks once again. She slept for about 5 hours. By the time she woke up around 9am, she was a little calmer than the day before. Yet within a couple of hours, the uncontrollable arm movements were back. The doctors then decided to put her on nozinan, a type of tranquilizer. She had a dose at 1.30pm on Friday afternoon. Within an hour, she fell asleep and remained asleep till the next day at 6.30am. Before leaving the Children's Hospital around 4pm on Friday, we had the opportunity to chat with the oncologist Consultant. We expressed how difficult we had found the last few days not being able to control Niamh's pain. They said that they had struggled as her symptoms seemed to get worse so quickly. He explained to us that the end of Niamh's battle may be sooner rather than later.
On Friday afternoon we moved into Acorns Hospice, the best decision we have ever made. It is a beautiful place, with a lot of very kind people. They have given us a family flat upstairs, as well as two adjacent bedrooms downstairs. Niamh's bed was made with Peppa Pig duvet covers and she has a Peppa Pig poster with her name on, above the bed. The last three days have been incredible. Niamh has been gradually getting better. We had a few smiles today (we had no smiles at all last week). She is still struggling with the itchiness and uncontrollable arm movements but she is managing a lot better. She hasn't needed any tranquilisers since Friday. She falls asleep on her own. We all sleep together as a family. The nurses (who are dressed in normal clothes) have taken over the medicines so we can all sleep at night. Our days are all about spending time with the girls. We have made use of their hydrotherapy pool every day since we have been here. When we go in we have the pool to ourselves, they put some nice relaxing music, lights off, and Niamh loves it. She is so calm and relaxed it is wonderful. When her lines came out a couple of weeks ago, both Niamh and Emilie were happy that they would be able to go swimming together again. On Friday we didn't think we would get the opportunity. Now we have been THREE times and if all is well we will continue to go every day. Acorns also has a multisensory room which is good fun and the most amazing garden. We have been able to take the girls out a lot.
So last week was horrible, these last few days have been a little nicer. Niamh is unfortunately not the child she was two weeks ago, she has lost a lot of her brightness and sparkle. Yet she is amazing us all once again by her sheer determination. The last few days have been so special. We are grateful for every minute, hour, day we get to spend together as a family. Emilie is doing well, she says we are on holiday in Acorns. She has everything she needs here, even a 'making room'. Most of the staff already know that she wants to be an artist when she grows up.
http://www.acorns.org.uk/our-hospices/acorns-in-birmingham
Wednesday, Niamh struggled a lot with headaches, itchiness, feeling uncomfortable. She fell asleep around 10.30pm but woke up a couple of hours later. She spent the whole night in our bed sitting up, refusing to lie down, moving her arms uncontrollably and unable to rest. It was a tough night. In the morning Alex took her to A&E. We wanted to know whether the neurosurgeons were planning anymore regarding her shunts and if not if we could increase her dose of painkillers. The neurosurgeons said that they didn't want to do anything as it was too early, but to keep her very hydrated. The oncologist consultant decided to replace the oral morphine she was on about 8 times a day with MST, a slow release morphine which is given every 12 hours. They said we could give Niamh more piriton (anti-icthing medicine) throughout the day, from every 8 hours, we could now give it every 4 hours.
By midnight on Thursday she was still awake refusing to lie down and moving her arms uncontrollably. Alex took her to A&E then, Emilie and I followed a couple of hours later. The doctors were very concerned about her. Were her symptoms due to the tumour progression or could they partly be side effects from the morphine and piriton? On top of everything, her heart rate was very low. They decided to give her some buccal midazolam, an anti convulsant drug. She fell asleep within minutes. It was amazing to see her calm and peaceful and be able to kiss her cheeks once again. She slept for about 5 hours. By the time she woke up around 9am, she was a little calmer than the day before. Yet within a couple of hours, the uncontrollable arm movements were back. The doctors then decided to put her on nozinan, a type of tranquilizer. She had a dose at 1.30pm on Friday afternoon. Within an hour, she fell asleep and remained asleep till the next day at 6.30am. Before leaving the Children's Hospital around 4pm on Friday, we had the opportunity to chat with the oncologist Consultant. We expressed how difficult we had found the last few days not being able to control Niamh's pain. They said that they had struggled as her symptoms seemed to get worse so quickly. He explained to us that the end of Niamh's battle may be sooner rather than later.
On Friday afternoon we moved into Acorns Hospice, the best decision we have ever made. It is a beautiful place, with a lot of very kind people. They have given us a family flat upstairs, as well as two adjacent bedrooms downstairs. Niamh's bed was made with Peppa Pig duvet covers and she has a Peppa Pig poster with her name on, above the bed. The last three days have been incredible. Niamh has been gradually getting better. We had a few smiles today (we had no smiles at all last week). She is still struggling with the itchiness and uncontrollable arm movements but she is managing a lot better. She hasn't needed any tranquilisers since Friday. She falls asleep on her own. We all sleep together as a family. The nurses (who are dressed in normal clothes) have taken over the medicines so we can all sleep at night. Our days are all about spending time with the girls. We have made use of their hydrotherapy pool every day since we have been here. When we go in we have the pool to ourselves, they put some nice relaxing music, lights off, and Niamh loves it. She is so calm and relaxed it is wonderful. When her lines came out a couple of weeks ago, both Niamh and Emilie were happy that they would be able to go swimming together again. On Friday we didn't think we would get the opportunity. Now we have been THREE times and if all is well we will continue to go every day. Acorns also has a multisensory room which is good fun and the most amazing garden. We have been able to take the girls out a lot.
So last week was horrible, these last few days have been a little nicer. Niamh is unfortunately not the child she was two weeks ago, she has lost a lot of her brightness and sparkle. Yet she is amazing us all once again by her sheer determination. The last few days have been so special. We are grateful for every minute, hour, day we get to spend together as a family. Emilie is doing well, she says we are on holiday in Acorns. She has everything she needs here, even a 'making room'. Most of the staff already know that she wants to be an artist when she grows up.
http://www.acorns.org.uk/our-hospices/acorns-in-birmingham
Wednesday, 17 August 2011
Headaches
Tough couple of days, Niamh has started to get what we believe to be severe headaches. We've been stepping up her pain medication and now she is on regular oral morphine. Tomorrow the Macmillan team will review giving her a background dose of morphine leaving the oral morphine when required.
At the same time we have been investigating whether her shunts are overdraining or not. We think this could be the cause (partly) of the headaches. This does fit with what has been happening to Niamh since her MRI last week. Headaches which do not respond to pain killers, the sunken look to the scars on her head and that she gets some relief from lying down (which would be good if she wanted to lie down!).
The neurosurgeons have adjusted her shunts from 1.5 to 2 on her left (VP shunt) and from 1 to 1.5 on her right (subdural shunt). If there is no improvement in the morning we'll contact them again and they may consider a CT scan to check the size of the ventricles in her brain.
With all codeine, ibruprofen and then morphine, Niamh seems to be starting to pick up side effects such as itching and some tummy discomfort too.
She has settled now after we've topped up all her medicine and applied special anti itching cream. She's sleeping in our bed tonight and we are listening to the music from the Prayers For Niamh event that Muireann, Helene's cousin, has kindly set up.
If you don't have access to facebook, here is Muireann's message:
Hello friends,
I am inviting you to become members of this group to pray for my cousins little 3 year old who is very very ill.
Niamh has a very aggressive brain tumour and although she has fought valiantly over the last year she seems to be losing the fight now.
As I lit my sacred candle today for her at 3, to pray for her, bring her to my heart and mind, I thought how nice it would be if we could all remember her in our prayers or hearts every day at any time but in particular between 3 and 4 pm.
I would really appreciate it if you can think of her and her family...mum Helene, dad Alex and older sister Emilie during this very difficult time. I thought that if you would like to pray or meditate then let's do it together as our own little community...light a candle, send her your love, sit still, pray to your God, listen to some inspirational music...whatever works..if we could all do it around the same time every day...well...you never know...the collective positive energy may just help...somehow.
You can follow her progress on http://niamhsilk.blogspot.com/
Thank you,
All my love,
Muireann
x
Monday, 15 August 2011
A very special Weekend
Niamh is now 3 years old! We know we are lucky that she was able to celebrate her 3rd birthday but I do wish it could have been under different circumstances.
Despite not feeling well, Niamh's face lit up when Nanny, Mike and Auntie Caitlin arrived on Saturday and when Uncle Fred, Auntie Aislinn and her three French cousins Camille, Marie and Amelie arrived on Sunday morning. Thank you so much to all of you for coming over at such short notice.
We had planned the party in Granny and Poppa's garden. Thanks to them, Alex and many others (you know who you are) it looked fantastic. By the time I arrived with Niamh the garden looked amazing. Our tent was up for Niamh to rest in. She spent the first part of the afternoon in the tent alternating opening presents, seeing her friends and resting. We were not sure if she was going to feel well enough to come out of the tent but around 5pm (after having had nurofen, codeine and paracetemol), she suddenly decided to put her princess dress on and come out. It was wonderful. She played a few games with her little friends and cousins, amongst which 'What's the time, Mr Wolf', her favorite game. She enjoyed listening to everyone sing 'happy birthday' to her. Seeing her surrounded by all the children felt great.
Thank you to everyone who came and made the day so special for Niamh and all of us.
We were expecting her to be very tired today, but she did not sleep all day. Thanks to advice from Mike and the Macmillan nurse, we seem to have controlled her headaches a bit better today with more regular painkillers (ie. avoiding peaks of pain). She enjoyed watching the videos of her party and going for a walk.
It was hard saying good bye to all the French family today. In moments like these, I really wish we lived close to everyone we love, that includes all of you in France and Ireland (:)).
How about Emilie? She seems to be coping ok so far. She loved the party yesterday, she loved spending time with her cousins and having that feeling of togetherness with them. It was nice to see her happy knowing how tough things are going to be for her over the next few weeks.
Despite not feeling well, Niamh's face lit up when Nanny, Mike and Auntie Caitlin arrived on Saturday and when Uncle Fred, Auntie Aislinn and her three French cousins Camille, Marie and Amelie arrived on Sunday morning. Thank you so much to all of you for coming over at such short notice.
We had planned the party in Granny and Poppa's garden. Thanks to them, Alex and many others (you know who you are) it looked fantastic. By the time I arrived with Niamh the garden looked amazing. Our tent was up for Niamh to rest in. She spent the first part of the afternoon in the tent alternating opening presents, seeing her friends and resting. We were not sure if she was going to feel well enough to come out of the tent but around 5pm (after having had nurofen, codeine and paracetemol), she suddenly decided to put her princess dress on and come out. It was wonderful. She played a few games with her little friends and cousins, amongst which 'What's the time, Mr Wolf', her favorite game. She enjoyed listening to everyone sing 'happy birthday' to her. Seeing her surrounded by all the children felt great.
Thank you to everyone who came and made the day so special for Niamh and all of us.
We were expecting her to be very tired today, but she did not sleep all day. Thanks to advice from Mike and the Macmillan nurse, we seem to have controlled her headaches a bit better today with more regular painkillers (ie. avoiding peaks of pain). She enjoyed watching the videos of her party and going for a walk.
It was hard saying good bye to all the French family today. In moments like these, I really wish we lived close to everyone we love, that includes all of you in France and Ireland (:)).
How about Emilie? She seems to be coping ok so far. She loved the party yesterday, she loved spending time with her cousins and having that feeling of togetherness with them. It was nice to see her happy knowing how tough things are going to be for her over the next few weeks.
Friday, 12 August 2011
Home
We are home and even though it feels very strange this time round, it is nice to be home.
Niamh started on steroids on Wednesday evening and it made a massive difference. She woke up the next morning at 6am, poked her little face up to see if I was awake and gave me a look to say: 'right, what shall we do?'. It was amazing to see my beautiful little girl smile again. We had a lovely day on the Ward (we knew we were going home later on in the day so it helped). We were overwhelmed by the kindness of the staff from Ward 10 as always. They sang her happy birthday and gave her a lovely present, a nice princess trolley so she can make us all some tea and coffee. Her favourite physios, Becky and Claire came to see her, the Speech and Language therapist, Jo also came. Niamh and we all as a family have become very fond of all the Ward 10 nurses and everyone who has helped with her treatment. We started in Bed 7 in Ward 10 on Wednesday 20th October and we left yesterday after having spent 10 days in Bed 7 again!
We had a lovely evening as a family last night. It is scary how many medicines Niamh is now on: steroids, various painkillers, antisickness, antibiotics to treat the possible chest infection. We have also been given a huge suitcase of medicines. The aim is for us to remain at home without the need to visit the hospital. If we are concerned about anything, the community nurses will come and should have everything they need in the 'suitcase'.
Emilie asked many questions about Niamh's scan last night. She knows Niamh is a lot more poorly than she was two weeks ago and she was worried. She wanted to know what other therapy we could try. Telling her that there was nothing more we could do was heartbreaking. She now knows what lies ahead over the next few short weeks. As you can imagine, she was very very upset and cried a lot. She loves her sister so much, it seems so unfair to have to make her go through this at such a young age. Today she has been fantastic, she is concentrating on enjoying our time with Niamh and is thinking of special things we can do together as a family.
This morning was a little stressful. We remembered in the night that Niamh's shunts had not been checked after the MRI scan on Wednesday. Both Niamh's shunts are programmable, the settings of which can be altered in the MRI (anything magnetic in fact can change their settings). As she was asleep we decided to wait till the morning. By the morning we could clearly see that the shunts were over draining. I took her to A&E/Ward 10 and the settings on both shunts were totally wrong. It is likely that the overdraining over the last 48 hours has been causing Niamh some more headaches today. As if she didn't have enough to cope with. Hopefully it should resolve itself over the next 48 hours.
Both girls are really looking forward to Niamh's princess birthday party on Sunday. French uncle, aunties, cousins, grandparents are all coming over, many of their little friends will be there too. We are praying that Niamh will feel well enough on the day to fully enjoy it.
Wednesday, 10 August 2011
Cancer
Today Niamh had an MRI scan. There was some priority to get it done as Niamh has really not been herself for the last week. Signs of tumour progression have been there along side the fevers she has been having.
We hoped that her symptoms could be explained by the fever and what we'd read about early late effects of radiotherapy being very like tumour progression. We'd also read and been told that the post radiotherapy scan could be inconclusive due to the effects of the radiation.
Unfortunately the scan was far from inconclusive.
Niamh has a very aggressive tumour which at the original site has grown to about 5cm in diameter. Niamh also has areas of tumour in the spaces around the outside of her brain and coating the walls of her ventricles.
We have some options but realistically they are limited now. Our focus and that of the hospital is on trying to get Niamh feeling a bit better and home for her birthday on Sunday.
Tuesday, 9 August 2011
Fever is back
We thought Niamh's infection was coming to an end but unfortunately her fever is back since 2am last night and keeps creeping up. She has already had three doses of calpol today.
Despite the fevers, Niamh has seemed a little better in herself today (once calpol kicks in). We had a good physio session. Niamh has lost a lot of strength in the last week. Her hands are also a lot weaker than they were and she struggles with them. Still she was able to walk to the playroom and back which she wasn't able to do yesterday.
As far as the MRI is concerned, we are still struggling to come to terms with what happened yesterday. We have now been told that she is on the "extras" list for tomorrow, ie. if there is a cancellation she will get a slot. So she will need to be starved once again from 3am and we are not guaranteed that she will get a slot. Another long day of waiting. Supposedly if she does not have the MRI tomorrow, they will definitely give her a slot on Friday.
As for the infection, we still have no idea what is causing it. This is getting very worrying. All the cultures they have taken so far have come back negative, still no results from her line taken on Saturday evening. The Consultant oncologist asked for Niamh to have a chest Xray today to make sure there is no infection in her chest. We do not yet have the results but the doctor did say it would be unlikely as her chest sounds fine. The neurosurgeons are not keen to intervene yet, they want to see the scan first. One possibility is that one or both of her shunts could be infected. This would be really bad news.
She was very brave today, the cannula in her hand which she needs for the IV antibiotics got blocked, they had to remove it and put a new one in. She now has one in her left hand. It was not pleasant. She also needed a blood test which was done by pricking her thumb and squeezing it hard for about 10 mins. Once again very unpleasant. Plus we had to pass a new NG tube as she got so upset with the cannula that she had a little vomit and the tube came out. She really has had her fair share.
We are still hoping and praying that she will be out of hospital by the end of the week so she can enjoy her birthday on Sunday.
Despite the fevers, Niamh has seemed a little better in herself today (once calpol kicks in). We had a good physio session. Niamh has lost a lot of strength in the last week. Her hands are also a lot weaker than they were and she struggles with them. Still she was able to walk to the playroom and back which she wasn't able to do yesterday.
As far as the MRI is concerned, we are still struggling to come to terms with what happened yesterday. We have now been told that she is on the "extras" list for tomorrow, ie. if there is a cancellation she will get a slot. So she will need to be starved once again from 3am and we are not guaranteed that she will get a slot. Another long day of waiting. Supposedly if she does not have the MRI tomorrow, they will definitely give her a slot on Friday.
As for the infection, we still have no idea what is causing it. This is getting very worrying. All the cultures they have taken so far have come back negative, still no results from her line taken on Saturday evening. The Consultant oncologist asked for Niamh to have a chest Xray today to make sure there is no infection in her chest. We do not yet have the results but the doctor did say it would be unlikely as her chest sounds fine. The neurosurgeons are not keen to intervene yet, they want to see the scan first. One possibility is that one or both of her shunts could be infected. This would be really bad news.
She was very brave today, the cannula in her hand which she needs for the IV antibiotics got blocked, they had to remove it and put a new one in. She now has one in her left hand. It was not pleasant. She also needed a blood test which was done by pricking her thumb and squeezing it hard for about 10 mins. Once again very unpleasant. Plus we had to pass a new NG tube as she got so upset with the cannula that she had a little vomit and the tube came out. She really has had her fair share.
We are still hoping and praying that she will be out of hospital by the end of the week so she can enjoy her birthday on Sunday.
Monday, 8 August 2011
No Scan for Niamh
Niamh didn't have an MRI scan today. She starved all day for her appointment at 3.30 and at 5 we were told that she would not get scanned today. The radiology department said "they would try to fit her in later in the week". You can imagine the way you feel when you're told this and you've known about this important date for 6 weeks.
We got clarification from Niamh's oncology consultant that he would speak with the head of radiology tomorrow morning. The earliest her scan will be is Wednesday as this is the next time they have a list for patients needing a general anesthetic. Ironically the builders were bringing in the pieces of Birmingham Children's Hospital's 3rd MRI scanner as I walked into the hospital, hopefully it will bring much needed capacity.
In the mean time Niamh was feeling quite good this morning and was up and about for her physio. This afternoon she was quite a lot grumpier and not quite her self. It may have just been lack of food. She seemed to lack energy and only wanted to watch her dvds. She was a bit shaky too. Temperature has stayed down in the low 37's which is great.
Unfortunately, Niamh was sick later when we started her food so we are a little concerned about her now. It seems like she should be getting better as the infection goes away but she seems to be getting a little worse in herself, just without the temperature. Time will tell, an MRI today could have also told, but now it's back to time. All could be explained by early late effects of Radiotherapy or many other things.
At the end of the day we were a little caught up in the riots in Birmingham, the childrens hospital was recommending parents not to leave and had locked their doors. It was quiet there when I left, I hope it stays that way through the night.
We'll update you on the scan date tomorrow when we know more.
Sunday, 7 August 2011
Sunday
Niamh slept well last night I changed her pull up nappy with her asleep lying down as she was out for the count. She had paracetamol about 10pm which kept her fever down through the night. at 4am she was back to 38 point something and had some more paracetamol.
Liz, Niamh's nurse had warned me that Niamh would have to give a blood sample in the morning. Without Niamh's central line (which makes taking blood easy and painless) this would be a more manual job involving a dr, a needle and her foot. That central line was actually quite handy.
So Niamh was the ward 10, 5am wake up, alarm clock as she screemed "dr, stop sticking that **!*&&*! needle in my foot ......" in rather less words. She was very brave though, especially as we had to repeat the same thing later in the day.
In the morning Niamh was very tired, she had a sleep for a couple of hours. By lunchtime we were waiting for her fever to return as the paracetamol wore off. It did come back but slightly less than before, mid to high 37s. We were very relieved it didn't go above this. Fingers crossed that removing the line has done the trick.
Niamh did seem a bit poorly in the afternoon, she had a couple of sicks and we had to replace her tube twice. Hopefully it was just her getting used to the food again and fighting off the infection and her residual fever
Tonight her temp is still mid to low 37s so it still looks like we're going in the right direction.
Her blood counts today were:
HB 10.4
White cells 4
Neutrophils 2.5
Platelets 122
All good as well.
So, sleep tonight, ready for an MRI scan tomorrow. Big day.
Saturday, 6 August 2011
Lines Out
It has been a very very long day. Niamh was starved from 3am for possible line removal at 9am. Unfortunately some more urgent cases came first and Niamh was only called in at 7.30pm. A long day of waiting.
The 'surgery' went well. It wasn't really a surgery, they say that they simply pulled the lines out. She now has a cannula in her right hand. I doubt she will like it tomorrow when she sees it, but I am sure she will be glad to be free of her wigglies (hickman lines). She was back on the ward by 8.15pm.
Let's hope for a fever free day tomorrow. It is actually lovely to see her without hickman lines again. We really hope she won't need new ones.
Click here to see what a hickman line looks like. She had hers since November.
Emilie has been fantastic today. She spent the afternoon making things next to Niamh and making friends. They haven't seen each other much this week so it was lovely to have them reunited.
The 'surgery' went well. It wasn't really a surgery, they say that they simply pulled the lines out. She now has a cannula in her right hand. I doubt she will like it tomorrow when she sees it, but I am sure she will be glad to be free of her wigglies (hickman lines). She was back on the ward by 8.15pm.
Let's hope for a fever free day tomorrow. It is actually lovely to see her without hickman lines again. We really hope she won't need new ones.
Click here to see what a hickman line looks like. She had hers since November.
Emilie has been fantastic today. She spent the afternoon making things next to Niamh and making friends. They haven't seen each other much this week so it was lovely to have them reunited.
Friday, 5 August 2011
Fever remains
Despite adding yet again a new antibiotics yesterday evening (Meropenem), Niamh still had a high fever in the night, this morning and again this afternoon. Today she has been particularly unwell. Not many smiles.
All the blood cultures they have done so far have come back negative. They sent a new one this morning. All the other tests have come back negative. As they don't know the source of the infection, they have decided to treat it as if it is a line infection. They plan to take her central lines out tomorrow morning, hopefully she will be first on the list. The surgery should not take too long, perhaps an hour or so.
They are hoping that once the lines are out, the antibiotics will clear the infection more easily. If it doesn't then they may have to consider tapping the shunts to see if they are infected. We really hope it doesn't come to that.
It is now likely that Niamh will remain in hospital over the weekend and most likely have the MRI scan as an inpatient on Monday afternoon.
Stress levels are high!
All the blood cultures they have done so far have come back negative. They sent a new one this morning. All the other tests have come back negative. As they don't know the source of the infection, they have decided to treat it as if it is a line infection. They plan to take her central lines out tomorrow morning, hopefully she will be first on the list. The surgery should not take too long, perhaps an hour or so.
They are hoping that once the lines are out, the antibiotics will clear the infection more easily. If it doesn't then they may have to consider tapping the shunts to see if they are infected. We really hope it doesn't come to that.
It is now likely that Niamh will remain in hospital over the weekend and most likely have the MRI scan as an inpatient on Monday afternoon.
Stress levels are high!
Thursday, 4 August 2011
Hot Hot Hot
Niamh's temperature keeps on spiking. The doctors added a stronger antibiotics yesterday afternoon, vancomicin. I was hoping it would work but her temperature spiked last night and again this morning. Her temperature is rising higher than earlier on in the week. The doctor has been again this morning, he is waiting for the results of the blood cultures taken on Tuesday night. Monday night's blood cultures were fine.
So three days worth of antibiotics and no improvement.
So three days worth of antibiotics and no improvement.
Wednesday, 3 August 2011
Back in Hospital
We had a lovely weekend, camped in Alex' parents' garden on Saturday with Ada and George. The girls loved it. Niamh was v excited about sleeping in the tent. I was a bit anxious about it but it went v well and Niamh slept all the way till 6.30am which for camping is pretty good.
Unfortunately she developed a small temperature on Sunday during the day. It stayed under 38 so we were hoping it would go away by itself. Yet by Monday evening, typically minutes before Adam and Chantal's arrival Niamh's temperature spiked. She was admitted on Monday evening. We are on Ward 10, the neurosurgical ward. As she is not neutropenic and as she has had a cold for now 10 days they first tried to treat her with amoxyllin which is a bit kinder than gentimicin. Unfortunately she was still warm and unsettled all day yesterday and when her temperature spiked to 38.8 last night they changed her antibiotics to tazocyn. I wish I could say it is making a difference but nope. She is still warm today, still unsettled. We are waiting to see the doctors today to find out if they have any ideas what is causing her temperature.
On a neuro side, Niamh is doing well. She is doing a lot of walking in and out the ward. We have been to the playground downstairs a couple of times. Her right hand is weaker than it was. The physio reassured me that it is not specially a sign of tumour regrowth. She said that when children have a toning pb in their limbs it often gets worse as they get more active and grow taller. Hopefully more exercise will help. The toning in her legs seems fine at this stage.
Scan on Monday, hopefully we will be home before then.
Unfortunately she developed a small temperature on Sunday during the day. It stayed under 38 so we were hoping it would go away by itself. Yet by Monday evening, typically minutes before Adam and Chantal's arrival Niamh's temperature spiked. She was admitted on Monday evening. We are on Ward 10, the neurosurgical ward. As she is not neutropenic and as she has had a cold for now 10 days they first tried to treat her with amoxyllin which is a bit kinder than gentimicin. Unfortunately she was still warm and unsettled all day yesterday and when her temperature spiked to 38.8 last night they changed her antibiotics to tazocyn. I wish I could say it is making a difference but nope. She is still warm today, still unsettled. We are waiting to see the doctors today to find out if they have any ideas what is causing her temperature.
On a neuro side, Niamh is doing well. She is doing a lot of walking in and out the ward. We have been to the playground downstairs a couple of times. Her right hand is weaker than it was. The physio reassured me that it is not specially a sign of tumour regrowth. She said that when children have a toning pb in their limbs it often gets worse as they get more active and grow taller. Hopefully more exercise will help. The toning in her legs seems fine at this stage.
Scan on Monday, hopefully we will be home before then.
Sunday, 24 July 2011
Niamh meets Mr Tumble
This weekend has been very special. Thanks to a very kind friend, Matt, Niamh and Emilie were able to meet Mr Tumble on Saturday morning down in Bagshot in Sussex. The charity that Matt contacted were very kind and they offered to put us up in a hotel nearby on Friday night. We set off just after school finished. The drive was long but the girls were very good. By the time we arrived at the hotel they were hyper. Niamh was shouting excitedly to Emilie 'WAIT' as her little legs couldn't walk as fast as Emilie's in the long corridor to our room. Full of giggles. They loved sharing a bed too. Despite being sick first thing in the morning on Saturday and needing a new NG tube, she was quickly back in form for Mr Tumble. We arrived at the hotel where the meeting was to take place just before 9am (the hotel was beautiful). There were about 6 or 7 families. Mr Tumble arrived, some of the kids went quiet, some shouted 'Mr Tumble'. He spent an hour with them, singing, doing impressions of some of his characters, teaching them some Makathon signs, and just being funny. At the end it was picture time and hug time too. We were quite impressed that both Niamh and Emilie felt so comfortable with him that they were happy to sit on his knees and have a hug. In fact they asked for it.
Today we took the girls to Peppa Pig World near Southampton. It seems to make sense to go as we were not too far. Once again the girls had a lovely time. Niamh was quite bunged up with a nasty cold but it did not stop her from going on all the rides. They both had a long sleep in the car on the way home. They were very happy to look at the pictures of their weekend away before bedtime. Emilie can't wait to go back to school to show her photos of Mr Tumble.
Niamh has been doing better this last week compared to the previous one. The previous one she was very tired, she was back on needing to hold two hands to walk, she kept waking up with one very swollen eye which was worrying us. This last week has been a lot better. She has had a lot more energy, her walking has been better and she is back on needing just one hand to walk. Her eye has also been behaving better. We have had a few isolated cases of sickness, which we try not to read too much into.
She is now on weekly blood test. Her platelets last Monday were 94!! Still low but a lot better. She will have another blood test tomorrow morning, really hoping her platelets are up in the 100s now....
Two weeks till the scan.....
A few pictures (more on facebook):
Today we took the girls to Peppa Pig World near Southampton. It seems to make sense to go as we were not too far. Once again the girls had a lovely time. Niamh was quite bunged up with a nasty cold but it did not stop her from going on all the rides. They both had a long sleep in the car on the way home. They were very happy to look at the pictures of their weekend away before bedtime. Emilie can't wait to go back to school to show her photos of Mr Tumble.
Niamh has been doing better this last week compared to the previous one. The previous one she was very tired, she was back on needing to hold two hands to walk, she kept waking up with one very swollen eye which was worrying us. This last week has been a lot better. She has had a lot more energy, her walking has been better and she is back on needing just one hand to walk. Her eye has also been behaving better. We have had a few isolated cases of sickness, which we try not to read too much into.
She is now on weekly blood test. Her platelets last Monday were 94!! Still low but a lot better. She will have another blood test tomorrow morning, really hoping her platelets are up in the 100s now....
Two weeks till the scan.....
A few pictures (more on facebook):
Sunday, 10 July 2011
Friday, 8 July 2011
A Week Post Radiotherapy
Niamh has had a lovely week since finishing radiotherapy.
She has been making it clear to us, well to me at least, that she wants to socialise and see other children. She is enjoying the after school trip to the playground with Emilie and her friends. We also had a mini party on Sunday to celebrate the end of radiotherapy. Both girls loved it and would love to have a party at home every day. Hmm. We also enjoyed Severine's visit for a couple of days. Severine is 8 months pregnant and the girls were fascinated by her baby bump. Niamh spent a good amount of time sitting next to the bump with her hand on it, waiting to be kicked. Niamh also went to her first ever playgroup this week. She was amazed when she saw the number of children and all the toys. She loved it.
Niamh's old nursery closed last January which is a real shame. I think she would have loved to go back for regular visits (It was a fantastic nursery with very caring staff and lovely children). Even though she hasn't been since last September she still seems to remember the children on the pictures and she loves it when some of the nursery teachers come to visit.
Niamh is continuing to improve with her communication. She seems able to say the end of words quite well, but misses out the first letter. So a snowman becomes a 'noman', a balloon becomes 'alloon'. She can clearly say 'work', 'bye', most words beginning with N and M and 'yeah' and 'no'. We are getting somewhere.
Food wise, we are not progressing much. She did ask for a barbecued sausage during her party on Sunday. We all went a bit quiet when she put a piece in her mouth. She seemed to really enjoy it. Since nothing. We are trying various types of food but nope, she doesn't want to try.
On a positive side she is back to the normal feed through the NG Tube (not the partly digested one anymore). We have now decreased the anti sickness dose and she is coping very well. I hope that by next week she will be weaned off the anti sickness.
Niamh is still doing well with her standing and walking. She wants to be able to walk by herself but she is not quite there yet. She is getting more confident though and keeps getting out of bed or off the sofa by herself. It is kind of great but also a bit scary as once she is off her bed or sofa she can't really go anywhere.
We had a meeting with the Consultant Neurosurgeon this morning. He was pleased to see that her scars have healed so well and that she looked well too. We are concerned that Niamh is still touching her head quite a lot, especially in the evenings when going to bed. She doesn't cry though. He said that the scars can cause shooting pains (nerve) for a very long time, possibly made worse by the radiation. Niamh has also been very very sensitive to the light over the last two weeks. He agreed that this was most likely caused by the radiation.
Niamh had a platelet transfusion last Friday and since her platelets have been behaving.
Blood counts on Wednesday:
HB: 11.5.
WCC: 2.3.
Plats: 65.
Neutr: 1.5.
Blood counts today:
HB: 11.3.
WCC: 2.0.
Plats: 66.
Neutr: 1.3.
Her white cells and neutrophils (ie. immune system) are still low. We are not sure why that is. We hope to address this with the Consultant Oncologist on Tuesday.
We have received today Niamh's MRI scan date. It will take place in the afternoon of Monday 8th August. We probably won't get the results immediately this time, we may have to wait a week or two.
I almost forgot a very important bit: Niamh has now had two consecutive full night sleep till past 7am. Hoping for a third one!
She has been making it clear to us, well to me at least, that she wants to socialise and see other children. She is enjoying the after school trip to the playground with Emilie and her friends. We also had a mini party on Sunday to celebrate the end of radiotherapy. Both girls loved it and would love to have a party at home every day. Hmm. We also enjoyed Severine's visit for a couple of days. Severine is 8 months pregnant and the girls were fascinated by her baby bump. Niamh spent a good amount of time sitting next to the bump with her hand on it, waiting to be kicked. Niamh also went to her first ever playgroup this week. She was amazed when she saw the number of children and all the toys. She loved it.
Niamh's old nursery closed last January which is a real shame. I think she would have loved to go back for regular visits (It was a fantastic nursery with very caring staff and lovely children). Even though she hasn't been since last September she still seems to remember the children on the pictures and she loves it when some of the nursery teachers come to visit.
Niamh is continuing to improve with her communication. She seems able to say the end of words quite well, but misses out the first letter. So a snowman becomes a 'noman', a balloon becomes 'alloon'. She can clearly say 'work', 'bye', most words beginning with N and M and 'yeah' and 'no'. We are getting somewhere.
Food wise, we are not progressing much. She did ask for a barbecued sausage during her party on Sunday. We all went a bit quiet when she put a piece in her mouth. She seemed to really enjoy it. Since nothing. We are trying various types of food but nope, she doesn't want to try.
On a positive side she is back to the normal feed through the NG Tube (not the partly digested one anymore). We have now decreased the anti sickness dose and she is coping very well. I hope that by next week she will be weaned off the anti sickness.
Niamh is still doing well with her standing and walking. She wants to be able to walk by herself but she is not quite there yet. She is getting more confident though and keeps getting out of bed or off the sofa by herself. It is kind of great but also a bit scary as once she is off her bed or sofa she can't really go anywhere.
We had a meeting with the Consultant Neurosurgeon this morning. He was pleased to see that her scars have healed so well and that she looked well too. We are concerned that Niamh is still touching her head quite a lot, especially in the evenings when going to bed. She doesn't cry though. He said that the scars can cause shooting pains (nerve) for a very long time, possibly made worse by the radiation. Niamh has also been very very sensitive to the light over the last two weeks. He agreed that this was most likely caused by the radiation.
Niamh had a platelet transfusion last Friday and since her platelets have been behaving.
Blood counts on Wednesday:
HB: 11.5.
WCC: 2.3.
Plats: 65.
Neutr: 1.5.
Blood counts today:
HB: 11.3.
WCC: 2.0.
Plats: 66.
Neutr: 1.3.
Her white cells and neutrophils (ie. immune system) are still low. We are not sure why that is. We hope to address this with the Consultant Oncologist on Tuesday.
We have received today Niamh's MRI scan date. It will take place in the afternoon of Monday 8th August. We probably won't get the results immediately this time, we may have to wait a week or two.
I almost forgot a very important bit: Niamh has now had two consecutive full night sleep till past 7am. Hoping for a third one!
Thursday, 30 June 2011
Radiotherapy OVER!!!!
This is it, Niamh had her last radiotherapy treatment this morning. Before her treatment, the anaesthetists asked her to sit down on one of the sofas and brought her a lovely present. She had hardly opened it that the radiotherapists arrived with more presents nicely wrapped up in 'Peppa Pig' paper. There was definitely a 'Peppa Pig' theme amongst the presents. They have all got to know her well over the last seven weeks. She was also given a lovely laminated 'Peppa Pig' Certificate for being a very brave little girl for the radiotherapy treatments. She was a little overwhelmed but really enjoyed it. They have all been extremely thoughtful and even gave a present for Emilie. A truly fantastic team!
I am sure she will miss them all as they have been so kind to her, but I doubt she will miss the general anaesthetic every morning.
Her blood counts today were a little disappointing:
HB: 10.8 (fine).
WCC: 2.2 (ok, but a bit low).
Platelets: 48 (grrrr, too low again).
Neut: 1.4 (okish but a bit low really).
During treatment her haemoglobin level needed to be maintained above 10. Now that treatment is finished it needs to be maintained above 8. She will hopefully be requiring less blood transfusions.
Platelets however still need to be above 50. I am waiting to hear from the Consultant whether she will have a transfusion today or whether he wants to do another test in a couple of days.
What's next?
Niamh will have a MRI scan in about 6 weeks. No date has yet been confirmed but likely to be around her 3rd birthday.
She will most likely be seen by the Oncology Consultant once a week (Tuesdays most likely) in Clinic. They will also continue to test her blood every week. We, in the meantime, will continue to investigate alternative treatments to increase Niamh's chances of long term survival.
We are hoping to have some quality family time this summer, a few days out and even possibly a holiday. Since Frederic's visit on Tuesday, both girls want to go to France so they can see their cousins and grandparents and go to the beach. Emilie would like to move to France and take her school and friends along with her.
All in all, we are hoping the second half of 2011 will be kinder to Niamh and us all (family and friends). We realise that Niamh's diagnosis nine months ago and her long treatment have caused a lot of pain and sadness to many around us, grandparents, aunties, uncles, cousins, friends and even friends of friends. We thank you all again for your wonderful support and prayers. We would like to ask you to keep Niamh is your prayers as unfortunately her fight is not over yet.
I am sure she will miss them all as they have been so kind to her, but I doubt she will miss the general anaesthetic every morning.
Her blood counts today were a little disappointing:
HB: 10.8 (fine).
WCC: 2.2 (ok, but a bit low).
Platelets: 48 (grrrr, too low again).
Neut: 1.4 (okish but a bit low really).
During treatment her haemoglobin level needed to be maintained above 10. Now that treatment is finished it needs to be maintained above 8. She will hopefully be requiring less blood transfusions.
Platelets however still need to be above 50. I am waiting to hear from the Consultant whether she will have a transfusion today or whether he wants to do another test in a couple of days.
What's next?
Niamh will have a MRI scan in about 6 weeks. No date has yet been confirmed but likely to be around her 3rd birthday.
She will most likely be seen by the Oncology Consultant once a week (Tuesdays most likely) in Clinic. They will also continue to test her blood every week. We, in the meantime, will continue to investigate alternative treatments to increase Niamh's chances of long term survival.
We are hoping to have some quality family time this summer, a few days out and even possibly a holiday. Since Frederic's visit on Tuesday, both girls want to go to France so they can see their cousins and grandparents and go to the beach. Emilie would like to move to France and take her school and friends along with her.
All in all, we are hoping the second half of 2011 will be kinder to Niamh and us all (family and friends). We realise that Niamh's diagnosis nine months ago and her long treatment have caused a lot of pain and sadness to many around us, grandparents, aunties, uncles, cousins, friends and even friends of friends. We thank you all again for your wonderful support and prayers. We would like to ask you to keep Niamh is your prayers as unfortunately her fight is not over yet.
Sunday, 26 June 2011
Another nice weekend
Niamh is impressing us with her energy level at this stage in her treatment.
Yesterday she was up at 5.45am, baking muffins and cake for Emilie's school fair by 8am. She had a short lie down before going to Emilie's school fair early afternoon. By the time we got home I expected her to have a sleep but no, she wanted to do more hand and foot painting, her new favourite activity (messy business).
Today, up at, hmmm, 5.45am again! She enjoyed playing outside with Emilie this morning. By 10am she asked to go back inside, but was sick before I had a chance to move her. I think she had just started to struggle with the heat and the brightness. We waited till after lunch to pass the NG tube and tried to tempt her with various food, but she had none of it. In the afternoon she was all excited about going to her little friend's birthday party (the girls have more of a social life than we do!!!). She loved every minute of it, especially the assault course. When it was time to sit down for food, she wanted a variety of food in her plate. She seemed a lot keener to try the food than at home with us. She eventually tried to put a grape in her mouth, but it must have felt too strange so she took it out. She was very happy to have a few hugs with her little friends.
She still felt great by the time we got home and went to sleep very happy and peacefully this evening.
She is now looking forward to the visit of Tonton Frederic on Tuesday to show him all her new refound skills.
Four days to go and radiotherapy is over.
Yesterday she was up at 5.45am, baking muffins and cake for Emilie's school fair by 8am. She had a short lie down before going to Emilie's school fair early afternoon. By the time we got home I expected her to have a sleep but no, she wanted to do more hand and foot painting, her new favourite activity (messy business).
Today, up at, hmmm, 5.45am again! She enjoyed playing outside with Emilie this morning. By 10am she asked to go back inside, but was sick before I had a chance to move her. I think she had just started to struggle with the heat and the brightness. We waited till after lunch to pass the NG tube and tried to tempt her with various food, but she had none of it. In the afternoon she was all excited about going to her little friend's birthday party (the girls have more of a social life than we do!!!). She loved every minute of it, especially the assault course. When it was time to sit down for food, she wanted a variety of food in her plate. She seemed a lot keener to try the food than at home with us. She eventually tried to put a grape in her mouth, but it must have felt too strange so she took it out. She was very happy to have a few hugs with her little friends.
She still felt great by the time we got home and went to sleep very happy and peacefully this evening.
She is now looking forward to the visit of Tonton Frederic on Tuesday to show him all her new refound skills.
Four days to go and radiotherapy is over.
Thursday, 23 June 2011
Radiotherapy Days 27 & 28 (5 left to go)
Things are still going relatively smoothly. Niamh had a nice afternoon with Emilie yesterday. Emilie was keen to do some hand and foot painting. Niamh is usually reluctant to get her hands or feet dirty but she got convinced by Emilie it would be fun. And fun it was. Before I had time to think they both had their legs painted in pink. They were very proud of themselves.
The physio had recommended feet painting for Niamh as the paintbrushes stimulate her feet to move up which is good work for her leg muscles. I have tried many times, but she wouldn't let me. Emilie tries once and now Niamh can't get enough of it.
Niamh's blood counts today had not changed much compared to Tuesday's:
Hb: 10.4.
WCC: 2.1 (slightly better).
Plats: 42.
Neutr: 1.4.
We went to the Children's Hospital late this afternoon for a platelet transfusion which she had at 6pm.
Tomorrow we will go back to the Children's Hospital after radiotherapy for a blood transfusion. Her Haemoglobin is above 10, but the Consultant, we assume, is expecting it to drop further over the next few days.
So she should be nicely topped up for the weekend and for her last week of radiotherapy. This time next week it will be all OVER!
We still don't have a date for the next MRI scan but the Consultant has said he would like to wait at least 6 weeks. This takes us around Niamh's third birthday.
Tuesday, 21 June 2011
Radiotherapy Days 25 & 26 (7 left to go)
Niamh is still doing well. She is in fact getting a little more adventurous and more rebellious each day which is great but scary!
She continues to take a few steps unaided every day but lacks the confidence to keep going. There are still a few more things she needs to (re)master: sitting from standing position, coming off the sofa, standing up from sitting. She is practising them all but she is still not strong enough to do them on her own. At the moment when she wants to sit, she bends her knees and hope for a soft landing which is luckily usually the case (our knees).
Niamh has been sleeping better, despite waking up very early, usually around 5.30am, this morning it was 3.30am. Rude!
Her communication is gradually improving. Emilie is helping a lot with this. The speech and language therapist has also noticed how much more Niamh talks when Emilie is with her. She will now come and see Niamh once Emilie is home from school.
Niamh's skin is looking better this week. Her neck is still dry, but a lot less red. The rest of her head is a little dry but not red. Her face is normal, no more red eyes. She looks a lot better than she did a couple of weeks ago.
Niamh is weighed every Monday. When she started 6 weeks ago she was 15.6kg, yesterday she was 15.1kg.
Niamh's blood counts today were disappointing:
HB: 10.8 (ok).
WCC: 1.7 (down).
Platelets: 48 (very down).
Neutrophils: 1.1 (low immune system again).
They usually transfuse platelets when they are under 50. The Consultant prefers to do another test on Thursday and see how they are then. She may need platelets and possibly blood later in the week.
So, so far so good, another week and two days to go.....
She continues to take a few steps unaided every day but lacks the confidence to keep going. There are still a few more things she needs to (re)master: sitting from standing position, coming off the sofa, standing up from sitting. She is practising them all but she is still not strong enough to do them on her own. At the moment when she wants to sit, she bends her knees and hope for a soft landing which is luckily usually the case (our knees).
Niamh has been sleeping better, despite waking up very early, usually around 5.30am, this morning it was 3.30am. Rude!
Her communication is gradually improving. Emilie is helping a lot with this. The speech and language therapist has also noticed how much more Niamh talks when Emilie is with her. She will now come and see Niamh once Emilie is home from school.
Niamh's skin is looking better this week. Her neck is still dry, but a lot less red. The rest of her head is a little dry but not red. Her face is normal, no more red eyes. She looks a lot better than she did a couple of weeks ago.
Niamh is weighed every Monday. When she started 6 weeks ago she was 15.6kg, yesterday she was 15.1kg.
Niamh's blood counts today were disappointing:
HB: 10.8 (ok).
WCC: 1.7 (down).
Platelets: 48 (very down).
Neutrophils: 1.1 (low immune system again).
They usually transfuse platelets when they are under 50. The Consultant prefers to do another test on Thursday and see how they are then. She may need platelets and possibly blood later in the week.
So, so far so good, another week and two days to go.....
Saturday, 18 June 2011
Radiotherapy Days 22, 23 & 24 (9 days left to go)
Niamh has now had 3 out of the 12 days of boost radiation. The first day it took quite a while as they had to take images again to make sure it was all done as accurately as possible. Yesterday it went much quicker. They do three radiation beams each day, one at the back of her brain (comes out just above the eyes), one on the left side of her brain at the top of her ear, and the other one on the right side of her brain just above the ear and it goes at an angle to avoid the cochlea. [easier to demonstrate than to put into words].
Niamh is still doing well. She was very happy yesterday to go to Emilie's birthday party. She seemed a little shocked at first to see so many familiar faces in the one place but soon got into it. She was very keen to show off her standing and walking skills to friends.
This morning she went to a little friend's birthday party in a park with Emilie. She enjoyed taking part in the activities (see photos).
Emilie is very happy that her sister could come to her party and their friend's party this morning. I am sure it is difficult for her because children do ask questions about Niamh, but she is so proud of her little sister that she wants to show her off to everyone. Everyone is being very supportive.
Niamh is still doing well. She was very happy yesterday to go to Emilie's birthday party. She seemed a little shocked at first to see so many familiar faces in the one place but soon got into it. She was very keen to show off her standing and walking skills to friends.
This morning she went to a little friend's birthday party in a park with Emilie. She enjoyed taking part in the activities (see photos).
Emilie is very happy that her sister could come to her party and their friend's party this morning. I am sure it is difficult for her because children do ask questions about Niamh, but she is so proud of her little sister that she wants to show her off to everyone. Everyone is being very supportive.
Tuesday, 14 June 2011
Radiotherapy Days 20 & 21 (12 days left to go).
That's it, Niamh had her last radiation to the spine today, no more. Phew. Tomorrow will be day 1 of 12 days of boost radiation to the original site of her tumour.
Niamh has had a lovely couple of days despite a couple of visits to the Children's Hospital. Her blood results yesterday were:
Hb: 9.2 (transfusion needed).
WCC: 3.2 (much better).
Platelets: 44 (transfusion needed, but we were relieved that they hadn't dropped too much from Friday).
Neutrophils: 2.5 (much much better).
Niamh had a platelet transfusion yesterday and a blood transfusion this afternoon.
Yesterday the community Physio and the community Occupational Therapist came to assess Niamh's needs. We were referred to both last December but we had to cancel every appointment so far as we were always back in hospital. We were pleased to make it yesterday. Niamh was so happy to show off her standing and walking with one hand only. The Occupational Therapist played with Niamh to assess her development. She felt that Niamh was doing great and didn't really need their input at this stage. They will check on her again in 4 to 6 months time. It was reassuring to hear that her development hasn't been too affected so far. The physio said that Niamh will be on the waiting list and they will give her some weekly sessions as soon as a physio is available.
This morning after treatment we went to the Radiotherapist Consultant clinic (weekly clinic). Niamh is usually asleep when we go. Today she was in full form. She showed off her standing, walked to the Consultant and held his hands, gave him lots of smiles and even blew him kisses. He was impressed. As far as the Radiotherapist Consultant is concerned, Niamh is doing great so far.
I feel that Niamh has really changed over the last few days. She is gaining confidence every day not only in her physical abilities but also with her communication. She is acting more and more like a 2, almost 3 year old. She is being cheeky, she is trying to be more independent (getting dressed, putting shoes on, etc), she gets herself more involved.
We now hope that she will keep on doing well at least till the weekend. It is Emilie's birthday on Friday and Emilie really wants her sister to make it to her party.
Picture with Caitlin was taken a couple of weeks ago when the sun was shining. The other one was on Sunday in the rain.
Niamh has had a lovely couple of days despite a couple of visits to the Children's Hospital. Her blood results yesterday were:
Hb: 9.2 (transfusion needed).
WCC: 3.2 (much better).
Platelets: 44 (transfusion needed, but we were relieved that they hadn't dropped too much from Friday).
Neutrophils: 2.5 (much much better).
Niamh had a platelet transfusion yesterday and a blood transfusion this afternoon.
Yesterday the community Physio and the community Occupational Therapist came to assess Niamh's needs. We were referred to both last December but we had to cancel every appointment so far as we were always back in hospital. We were pleased to make it yesterday. Niamh was so happy to show off her standing and walking with one hand only. The Occupational Therapist played with Niamh to assess her development. She felt that Niamh was doing great and didn't really need their input at this stage. They will check on her again in 4 to 6 months time. It was reassuring to hear that her development hasn't been too affected so far. The physio said that Niamh will be on the waiting list and they will give her some weekly sessions as soon as a physio is available.
This morning after treatment we went to the Radiotherapist Consultant clinic (weekly clinic). Niamh is usually asleep when we go. Today she was in full form. She showed off her standing, walked to the Consultant and held his hands, gave him lots of smiles and even blew him kisses. He was impressed. As far as the Radiotherapist Consultant is concerned, Niamh is doing great so far.
I feel that Niamh has really changed over the last few days. She is gaining confidence every day not only in her physical abilities but also with her communication. She is acting more and more like a 2, almost 3 year old. She is being cheeky, she is trying to be more independent (getting dressed, putting shoes on, etc), she gets herself more involved.
We now hope that she will keep on doing well at least till the weekend. It is Emilie's birthday on Friday and Emilie really wants her sister to make it to her party.
Picture with Caitlin was taken a couple of weeks ago when the sun was shining. The other one was on Sunday in the rain.
Sunday, 12 June 2011
Second First Steps
We've had another lovely weekend. Niamh is looking a bit burnt from the radiotherapy but she is still in good spirits and trying to be as active and involved as she can. Today she took her second first steps, she has learnt to walk for the second time! Once when she was about 1 year old and again now at 2 3/4. She walked 7 or 8 steps between mum and dad without anyone holding her which was very impressive. Hopefully in the coming weeks she will continue to get stronger and gain some of her independence back. Radiotherapy symptoms permitting.
She only has two more days of radiation to the whole brain and spine which is a relief. After that she has 12 days of boost to the original site of her tumour.
Niamh has been sleeping a bit better but has been sick a couple of times this weekend. Tube passing went without a hitch which is fortunate as Niamh's platelets are probably very low. She'll have a blood test tomorrow and she may need a platelet transfusion. We'll wait and see.
Saturday, 11 June 2011
Radiotherapy Days 17,18 & 19 (14 left to go)
Only 2 weeks and four days left of treatment.
This week has actually gone a lot better than I had anticipated. She has been looking better, her eyes are possibly looking a little less red than last week. Her head and neck are however getting redder each day.
I thought we would be in hospital all day yesterday for transfusions but we ended up having a lovely day at home with Emilie. She enjoyed her many visitors, especially showing them her standing and dancing.
Her blood counts yesterday were:
HB: 10.2 (they transfuse below 10).
WCC: 2.8 (improvement).
Platelets: 54 (they transfuse under 50).
Neutrophils: 2.1 (improvement).
We were very pleased that she is not neutropenic and that her counts have plateaued a little. We were hoping that they would give her a platelet transfusion as her platelets are low but the Consultant prefers to wait till Monday.
So Niamh is doing well so far, she struggles a little with her concentration but I guess it can be expected with the treatment.
Niamh's sickness has been a little better this week compared to last weekend. She was sick once on Thursday afternoon and once last night at 3am. We are hoping she won't be too sick over the weekend as passing Ng tubes with low platelets is stressful.
This week has actually gone a lot better than I had anticipated. She has been looking better, her eyes are possibly looking a little less red than last week. Her head and neck are however getting redder each day.
I thought we would be in hospital all day yesterday for transfusions but we ended up having a lovely day at home with Emilie. She enjoyed her many visitors, especially showing them her standing and dancing.
Her blood counts yesterday were:
HB: 10.2 (they transfuse below 10).
WCC: 2.8 (improvement).
Platelets: 54 (they transfuse under 50).
Neutrophils: 2.1 (improvement).
We were very pleased that she is not neutropenic and that her counts have plateaued a little. We were hoping that they would give her a platelet transfusion as her platelets are low but the Consultant prefers to wait till Monday.
So Niamh is doing well so far, she struggles a little with her concentration but I guess it can be expected with the treatment.
Niamh's sickness has been a little better this week compared to last weekend. She was sick once on Thursday afternoon and once last night at 3am. We are hoping she won't be too sick over the weekend as passing Ng tubes with low platelets is stressful.
Wednesday, 8 June 2011
Niamh's standing
Quality of the video is not great, but you can see Niamh standing whilst playing skittles. She spent most of the afternoon standing on her own and showing off to our visitors. The physio was very pleased with her this morning. Oh and she slept all night till 6am!!
After her first surgery in October she couldn't clap anymore. She has come a long way.
After her first surgery in October she couldn't clap anymore. She has come a long way.
Tuesday, 7 June 2011
Radiotherapy Days 15 & 16 (17 to go)
Almost half way through!
Let's start with some good news. Niamh is now standing unaided. She is loving it. She still wants someone near her but she can actually hold on her two legs by herself. Stronger leg muscles combined with greater upper body balance have given her the confidence to let go. She has spent most of the afternoon standing, enjoying some new found half independence (only half as someone still needs to be next to her).
Niamh hasn't been able to stand or walk unaided since she fell in France on 28th August 2010 so it is a big day!! It would be amazing if she could walk soon too.
Niamh's treatments yesterday and today have been relatively smooth. There is now another little girl who needs general anaesthetic after her so the team have to wake Niamh up a little quicker. She is not too keen on waking up so she stays asleep all the way till we get home.
The team at the Cancer Centre all say she looks great (despite her red eyes). I had a long chat yesterday with Helen, the specialist nurse. She believes the treatment is also to blame for the red eyes as the radiation beams are going close to the back of her eyes. So it is not just the tape.
She was a little confused as to why Niamh was sick so many times over the weekend. She says children are usually sick during the week and not so much over the weekend. Niamh has actually not been sick since Sunday night. The radiotherapist has increased her dose of ondensantron, the anti-sickness medicine.
Niamh is touching her head more and more, especially when tired. She doesn't cry though. Helen thinks her scar may feel a bit tight and she may get shooting pains every now and then.
At this stage in Niamh's treatment, we can expect nausea, tiredness and headaches. The headaches are caused by swelling in the brain. As Niamh had an empty hole (tumour removed in April), they think that she shouldn't suffer from headaches too much as there is space for swelling to take place. Hmmmmm! Hopefully that is the case.
After a couple of weeks of sleeping kind of well, Niamh has started waking up in the middle of the night again and is unable to get herself back to sleep. We end up having to resort to 'Peppa Pig' dvd in an attempt to get her to fall asleep. Last night she was awake between 1am and 5am. I mentioned this to the radiotherapist but he is not concerned. We are concerned that she may be losing out on important and needed sleep.
Niamh's blood counts today were:
Hb: 10.4.
Wcc: 1.8.
Neut: 1.2.
Plats: 74.
Everything is a bit low but fine for now. Next test on Friday.
Let's start with some good news. Niamh is now standing unaided. She is loving it. She still wants someone near her but she can actually hold on her two legs by herself. Stronger leg muscles combined with greater upper body balance have given her the confidence to let go. She has spent most of the afternoon standing, enjoying some new found half independence (only half as someone still needs to be next to her).
Niamh hasn't been able to stand or walk unaided since she fell in France on 28th August 2010 so it is a big day!! It would be amazing if she could walk soon too.
Niamh's treatments yesterday and today have been relatively smooth. There is now another little girl who needs general anaesthetic after her so the team have to wake Niamh up a little quicker. She is not too keen on waking up so she stays asleep all the way till we get home.
The team at the Cancer Centre all say she looks great (despite her red eyes). I had a long chat yesterday with Helen, the specialist nurse. She believes the treatment is also to blame for the red eyes as the radiation beams are going close to the back of her eyes. So it is not just the tape.
She was a little confused as to why Niamh was sick so many times over the weekend. She says children are usually sick during the week and not so much over the weekend. Niamh has actually not been sick since Sunday night. The radiotherapist has increased her dose of ondensantron, the anti-sickness medicine.
Niamh is touching her head more and more, especially when tired. She doesn't cry though. Helen thinks her scar may feel a bit tight and she may get shooting pains every now and then.
At this stage in Niamh's treatment, we can expect nausea, tiredness and headaches. The headaches are caused by swelling in the brain. As Niamh had an empty hole (tumour removed in April), they think that she shouldn't suffer from headaches too much as there is space for swelling to take place. Hmmmmm! Hopefully that is the case.
After a couple of weeks of sleeping kind of well, Niamh has started waking up in the middle of the night again and is unable to get herself back to sleep. We end up having to resort to 'Peppa Pig' dvd in an attempt to get her to fall asleep. Last night she was awake between 1am and 5am. I mentioned this to the radiotherapist but he is not concerned. We are concerned that she may be losing out on important and needed sleep.
Niamh's blood counts today were:
Hb: 10.4.
Wcc: 1.8.
Neut: 1.2.
Plats: 74.
Everything is a bit low but fine for now. Next test on Friday.
Sunday, 5 June 2011
Tired but Tough
We've had a nice weekend again, friends on Saturday and grandparents on Sunday. Niamh has been holding in there but we can see that the radiation therapy is starting to slow her down. She is starting to get quite tired and has red marks under her eyes which make her look even more tired. She's been sick a few times and we've replaced her tube.
She really enjoyed seeing baby Isla and also playing with our friends and going to the playground. Walking is still going very well and she managed the walk across the whole climbing frame with a bit of help.
We're glad that she's well into her radiotherapy treatment now and approaching the half way mark this week. Back to school for Emilie this week, she was great company for Niamh last week and I think she'll be missed this week.
Friday, 3 June 2011
Radiotherapy Days 12,13 and 14 (19 left to go)
Three weeks in, four to go. Niamh is still coping very well with it all.
Treatments are still going smoothly. Emilie has helped a lot this week. Shame she has to go back to school next week. But as she says, she has to, she has some learning to do.
On Thursday morning Niamh had a very good physio session with Claire. I thought she would be too tired as we had only just arrived home from her treatment but she was fine, she got into it. Claire is very happy with her progress.
This morning she had a session with Jo and Kaye, speech and langage therapists. Emilie helped too. They had a great time, lots and lots of giggling and shouting. Jo hadn't seen Niamh for three weeks and couldn't believe how much she had progressed with her sounds.
Niamh's blood counts were a bit confusing today:
at the Cancer Centre they were:
Hb: 9.6.
White Cells: 2.2.
Platelets: 35 (very low... transfusion needed).
Neutrophils: 1.4.
So we had to go into the Children's hospital for midday for a blood transfusion and a platelet transfusion. Haemoglobin needs to be above 10 when having radiotherapy.
When we arrived at the Clinic at the Children's Hospital they did the cross match for the blood and did another full blood test for their own record.
By 3pm, I was given some new blood results:
HB: 10.8.
White Cells: 2.3.
Platelets: 33.
Neutrophils: 1.7.
Quite a big difference for the haemoglobin level. The consultant said she wouldn't need blood as it was above 10, just platelets. So we waited, and waited and waited some more and at 5pm she started the platelet transfusion which lasted 30 minutes. By then she was very tired, very bored of being in the Clinic and was sick (luckily tube stayed in). Such a waste of an afternoon. By the time we got in the car to go home, around 6.15pm she was not smiling. Luckily her smile came back when she got home and Emilie gave her a cuddle.
Niamh hasn' t been looking so well this week. The anaesthetists have to put tape on her eyes every morning so that her eyes remain close when they put her mask on. Niamh has very sensitive skin and it has made the skin under her eyes look very sore and red. It makes her look even more tired than she really is.
Apart from all this, the week has been nice. The girls have enjoyed a few trips to the playgroung, Emilie has had a couple of friends over to play which Niamh has also enjoyed. It has been a nice sunny week. Hopefully a nice sunny weekend ahead.
Treatments are still going smoothly. Emilie has helped a lot this week. Shame she has to go back to school next week. But as she says, she has to, she has some learning to do.
On Thursday morning Niamh had a very good physio session with Claire. I thought she would be too tired as we had only just arrived home from her treatment but she was fine, she got into it. Claire is very happy with her progress.
This morning she had a session with Jo and Kaye, speech and langage therapists. Emilie helped too. They had a great time, lots and lots of giggling and shouting. Jo hadn't seen Niamh for three weeks and couldn't believe how much she had progressed with her sounds.
Niamh's blood counts were a bit confusing today:
at the Cancer Centre they were:
Hb: 9.6.
White Cells: 2.2.
Platelets: 35 (very low... transfusion needed).
Neutrophils: 1.4.
So we had to go into the Children's hospital for midday for a blood transfusion and a platelet transfusion. Haemoglobin needs to be above 10 when having radiotherapy.
When we arrived at the Clinic at the Children's Hospital they did the cross match for the blood and did another full blood test for their own record.
By 3pm, I was given some new blood results:
HB: 10.8.
White Cells: 2.3.
Platelets: 33.
Neutrophils: 1.7.
Quite a big difference for the haemoglobin level. The consultant said she wouldn't need blood as it was above 10, just platelets. So we waited, and waited and waited some more and at 5pm she started the platelet transfusion which lasted 30 minutes. By then she was very tired, very bored of being in the Clinic and was sick (luckily tube stayed in). Such a waste of an afternoon. By the time we got in the car to go home, around 6.15pm she was not smiling. Luckily her smile came back when she got home and Emilie gave her a cuddle.
Niamh hasn' t been looking so well this week. The anaesthetists have to put tape on her eyes every morning so that her eyes remain close when they put her mask on. Niamh has very sensitive skin and it has made the skin under her eyes look very sore and red. It makes her look even more tired than she really is.
Apart from all this, the week has been nice. The girls have enjoyed a few trips to the playgroung, Emilie has had a couple of friends over to play which Niamh has also enjoyed. It has been a nice sunny week. Hopefully a nice sunny weekend ahead.
Tuesday, 31 May 2011
Radiotherapy Day 11 (22 days to go)
The weekend has been a pleasant one, despite the miserable weather. Emilie was upset last night, she wants to be in France because it doesn't rain there! hmmmmm. Yet the girls enjoyed jumping in muddy puddles yesterday, Niamh loved it. Niamh is obsessed with 'Peppa Pig' at the moment. Emilie says that she is Peppa Pig and Niamh is George but a girl George. So Niamh was enjoying being George and splashing in the puddles. The bigger the puddle the better.
Niamh's favorite activity at the moment is dancing. I am ashamed to say that the girls like to dance on Rihanna 'xxx in the air' song, totally inappropriate lyrics but it does get Niamh moving and singing.
Niamh has been okay on the whole this weekend. She was sick a couple of times and needed her ng tube repassed. In the last 10 days we have had about 5 new Ng tubes. She is only sick once every two or three days but unfortunately the tube comes out every time.
Radiotherapy went well this morning. Niamh was very proud to show off her sister to everyone. Emilie was pleased to at last see where Niamh has been going every morning and meet the team that she has been hearing about. Emilie was great, she held and stroke Niamh's hand when Niamh went to sleep. By the time it was time to wake Niamh up, Emilie helped and got Niamh to smile and laugh. She wants to accompany us again tomorrow.
Niamh has put on weight over the last week, from 15.4kg to 15.6kg, same scale. It is a little surprising as she has been feeding less and has been sick a few times. Her blood counts today were:
Haemoglobin: 11.1 which is good.
White Cells: 1.9. Better than last week.
Platelets: 71. Down from last week but not too much of a drop this time.
Neutrophils: 1.2. Low, but not neutropenic.
Niamh's favorite activity at the moment is dancing. I am ashamed to say that the girls like to dance on Rihanna 'xxx in the air' song, totally inappropriate lyrics but it does get Niamh moving and singing.
Niamh has been okay on the whole this weekend. She was sick a couple of times and needed her ng tube repassed. In the last 10 days we have had about 5 new Ng tubes. She is only sick once every two or three days but unfortunately the tube comes out every time.
Radiotherapy went well this morning. Niamh was very proud to show off her sister to everyone. Emilie was pleased to at last see where Niamh has been going every morning and meet the team that she has been hearing about. Emilie was great, she held and stroke Niamh's hand when Niamh went to sleep. By the time it was time to wake Niamh up, Emilie helped and got Niamh to smile and laugh. She wants to accompany us again tomorrow.
Niamh has put on weight over the last week, from 15.4kg to 15.6kg, same scale. It is a little surprising as she has been feeding less and has been sick a few times. Her blood counts today were:
Haemoglobin: 11.1 which is good.
White Cells: 1.9. Better than last week.
Platelets: 71. Down from last week but not too much of a drop this time.
Neutrophils: 1.2. Low, but not neutropenic.
Friday, 27 May 2011
Radiotherapy Days 8,9 and 10 (23 left to go)
Two weeks completed and so far so good. Niamh is doing well, possibly a little more tired but she still won't sleep during the day and still wakes up earlyish. The treatments on Wednesday, Thursday and Friday went smoothly. On Friday she took a long time to wake up. The anaesthetist said it was quite normal for the children to take longer on Fridays after 5 consecutive days of anaesthetic.
She has now settled quite nicely in her morning routine: hospital, teeth, vaseline on lips, head clean, full on moisturiser. No more screams, just a couple of attempts at pushing me away. Her mouth must be getting quite dry after treatment as she asked for more water in her mouth yesterday when brushing teeth. She took it from a spoon. Hopefully by the end of her treatment she will be drinking from a cup.
She had a very good physio session on Thursday morning. The physio feels that she is not far from walking unaided now. She still drags her right foot a little but it is improving. The main problem is that she lacks confidence in her ability to walk and stand unaided.
Her blood counts yesterday were still low:
Haemoglobin: 11.6 which is good.
White Cells: 1.4. Low.
Platelets: 94. Dropped again.
Neutrophils: 0.8. Very low, considered neutropenic, ie. very weak immune system.
The White Cells and Neutrophils have plateaued a bit, but her platelets are still dropping which is a concern. They will do another blood test on Tuesday morning. If her platelet counts are under 50 she will most likely need a platelet transfusion.
All in all, the last two weeks have gone relatively well. She looks well and happy. Next week Niamh will only have four treatments as Monday is a Bank Holiday.
She has now settled quite nicely in her morning routine: hospital, teeth, vaseline on lips, head clean, full on moisturiser. No more screams, just a couple of attempts at pushing me away. Her mouth must be getting quite dry after treatment as she asked for more water in her mouth yesterday when brushing teeth. She took it from a spoon. Hopefully by the end of her treatment she will be drinking from a cup.
She had a very good physio session on Thursday morning. The physio feels that she is not far from walking unaided now. She still drags her right foot a little but it is improving. The main problem is that she lacks confidence in her ability to walk and stand unaided.
Her blood counts yesterday were still low:
Haemoglobin: 11.6 which is good.
White Cells: 1.4. Low.
Platelets: 94. Dropped again.
Neutrophils: 0.8. Very low, considered neutropenic, ie. very weak immune system.
The White Cells and Neutrophils have plateaued a bit, but her platelets are still dropping which is a concern. They will do another blood test on Tuesday morning. If her platelet counts are under 50 she will most likely need a platelet transfusion.
All in all, the last two weeks have gone relatively well. She looks well and happy. Next week Niamh will only have four treatments as Monday is a Bank Holiday.
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